Our oncologist is wondering if my husband's dizziness when standing can be autonomic neuropathy. His neuropathy in feet/up towards knees and fingers has gotten pretty severe. And between that and the dizziness he is having trouble getting up and walking without needing to sit almost immediately. For some reason sitting in the car for the 1.5 hours to go to town causes the worst dizziness so getting into the doctor's office, or in to the infusion room requires some care. Same happens when we drive home. His blood pressure is pretty normal when sitting, but standing makes it drop 20 or 30 points. Anyway, I had never heard of autonomic neuropathy before and wondered if anyone else had oncologists mention it.
Our oncologist is wondering if my husband's dizziness when standing can be autonomic neuropathy. His neuropathy in feet/up towards knees and fingers has gotten pretty severe. And between that and the dizziness he is having trouble getting up and walking without needing to sit almost immediately. For some reason sitting in the car for the 1.5 hours to go to town causes the worst dizziness so getting into the doctor's office, or in to the infusion room requires some care. Same happens when we drive home. His blood pressure is pretty normal when sitting, but standing makes it drop 20 or 30 points. Anyway, I had never heard of autonomic neuropathy before and wondered if anyone else had oncologists mention it.
I have had autonomic neuropathy for many years. I have slow stomach emptying from it and balance issues. The PT guy I went to explained that there are receptors in our legs that assist us in knowing where we are in space. That is how we automatically balance when standing and moving around. With neuropathy these receptors are damaged. I need my eyes to see my surroundings to be able to get around. Or be able to hang on to something.
You might want to check into some physical therapy. It might not be an option at this time though. As far as car rides go maybe just recline back and close his eyes. Or try a blindfold. When I get a really bad vertigo attack, I have to lay down and keep my eyes closed. After a number of hours it will start to improve. The motion of the car moving will make it more difficult. I also carry motion sickness meds with me. I have not had a really bad case to try them out though.
Wishing only good things for you and everyone dealing with cancer.
I have had autonomic neuropathy for many years. I have slow stomach emptying from it and balance issues. The PT guy I went to explained that there are receptors in our legs that assist us in knowing where we are in space. That is how we automatically balance when standing and moving around. With neuropathy these receptors are damaged. I need my eyes to see my surroundings to be able to get around. Or be able to hang on to something.
You might want to check into some physical therapy. It might not be an option at this time though. As far as car rides go maybe just recline back and close his eyes. Or try a blindfold. When I get a really bad vertigo attack, I have to lay down and keep my eyes closed. After a number of hours it will start to improve. The motion of the car moving will make it more difficult. I also carry motion sickness meds with me. I have not had a really bad case to try them out though.
Wishing only good things for you and everyone dealing with cancer.
Thank you for your knowledge and suggestions! Dan has had the numbness from neuropathy getting worse, but we had never heard of autonomic neuropathy until this past week. His oncologist is suggesting a short break from chemo to see if that helps his various side effects. Balance is definitely one... between the dizziness and numbness in his feet/legs... it is difficult for him to walk. So far he has resisted using the walker I bought, but I think the day is coming .... hopefully before he falls and hurts himself. Thanks.
Thank you for your knowledge and suggestions! Dan has had the numbness from neuropathy getting worse, but we had never heard of autonomic neuropathy until this past week. His oncologist is suggesting a short break from chemo to see if that helps his various side effects. Balance is definitely one... between the dizziness and numbness in his feet/legs... it is difficult for him to walk. So far he has resisted using the walker I bought, but I think the day is coming .... hopefully before he falls and hurts himself. Thanks.
Hi,
I have Autonomic polyneuropathy. It is believed to have started from a severe case of Campylobacter in 2013. It is not helped from uncontrollable T2 diabetes and excessively high BP for over 30 years.
Cheers
I was wondering what your symptoms are like minor like having a voodoo doll with my name on it and someone sticking pins arbitrarily everywhere, internally, and externally, and I’m not talking about occasional numbness
Hi,
A good analogy. I think of it as when traffic lights stop working and the ensuing traffic chaos until service is resumed.
For me it is having a disfunctional digestive system from throat to the bowel and everything inbetween, which is permanent now. There is no treatment or cure for this. Random bouts of falling to the left which are now a stumble as the brain recognises the left foot hasn't moved and counters rapidly. I notice I start shuffling my feet when I get really bad, random lapses in remembering recent information, several times with the same info, usually the simplest of things to remember, like a time or a date. Poor hand eye coordination and cognetive skills, random muscle and joint pain random chest pain simulating a heart attack. It also interferes with my blood pressure when it wants, usually keeping it higher but can also drop it suddenly, because it can.
With ANS the brain still functions it is just the signals that have glitches, signals to and from the muscles and pain recepters get corrupted, randomly which can lead to muscular twitching not understanding what the signal is to do what.
As for the neuropathy part I have the typical diabetic neuropathy with feet and hands experiencing lack of sensation like I have socks and gloves on always.
So Autonomic polyneuropathy (ANS) is every nerve in the body is effected. The only counter I have found is to force the body to do as indicated by concentrating on the job at hand. The more I cancentrate the better the signal is interpreted. I'm unable to walk a straight line when moving slowly, my counter is to walk at pace which I concentrate on and ignore all around me, then I walk straight. This is what lead me to the realisation that concentrating on what I'm doing focuses the communication between muscles and brain over riding some of the glitches. This minimises the effects of ANS until I slow up to relax, then it's back to glitching.
To sum it up some things are majorly corrupted while others are lessor random features that can periodically get out if hand.
Cheers
Hi,
A good analogy. I think of it as when traffic lights stop working and the ensuing traffic chaos until service is resumed.
For me it is having a disfunctional digestive system from throat to the bowel and everything inbetween, which is permanent now. There is no treatment or cure for this. Random bouts of falling to the left which are now a stumble as the brain recognises the left foot hasn't moved and counters rapidly. I notice I start shuffling my feet when I get really bad, random lapses in remembering recent information, several times with the same info, usually the simplest of things to remember, like a time or a date. Poor hand eye coordination and cognetive skills, random muscle and joint pain random chest pain simulating a heart attack. It also interferes with my blood pressure when it wants, usually keeping it higher but can also drop it suddenly, because it can.
With ANS the brain still functions it is just the signals that have glitches, signals to and from the muscles and pain recepters get corrupted, randomly which can lead to muscular twitching not understanding what the signal is to do what.
As for the neuropathy part I have the typical diabetic neuropathy with feet and hands experiencing lack of sensation like I have socks and gloves on always.
So Autonomic polyneuropathy (ANS) is every nerve in the body is effected. The only counter I have found is to force the body to do as indicated by concentrating on the job at hand. The more I cancentrate the better the signal is interpreted. I'm unable to walk a straight line when moving slowly, my counter is to walk at pace which I concentrate on and ignore all around me, then I walk straight. This is what lead me to the realisation that concentrating on what I'm doing focuses the communication between muscles and brain over riding some of the glitches. This minimises the effects of ANS until I slow up to relax, then it's back to glitching.
To sum it up some things are majorly corrupted while others are lessor random features that can periodically get out if hand.
Cheers
Hi,
It took me a little while to get over the devastation of this disease but I finally woke up to the fact we all die anyway, just some of us maybe sooner than expected. I try not to let it bother me or stop me doing what I want to do. There are days when all I can do is sit and wait out the daily symptoms, while other days I'm as good as I can expect and get on with life. I have had temporary paralasis from the waist down and waking to be unable to speak with no knowledge of what speach is or even words. A left leg that thinks it has taken the next step only to fall when the right leg figures it is it's turn to move. Thankfully each is only temporary and resolved in a minute or two. My digestion is pretty well stuffed and there is nothing that can be done but manage it as best I can. I push myself through these events and won't give up, I don't know how to give up, this disease is not going to define me or what I can do, despite it constantly nibbling away at me. Sadly this won't stop it and eventually I will have no option but to capitulate, but until then I do what I have to do to deal with it and other health issues I'm plagued with. I believe I'm better know than when this all kicked off having made my own play book to guide me. I refuse painkillers and don't take anything for the other health issues, but I have no option but to medicate the digestive system, and that is barely making a difference. A difference that is certainly noticable if I stop treatment, then all hell lets lose.
Cheers
Hi,
It took me a little while to get over the devastation of this disease but I finally woke up to the fact we all die anyway, just some of us maybe sooner than expected. I try not to let it bother me or stop me doing what I want to do. There are days when all I can do is sit and wait out the daily symptoms, while other days I'm as good as I can expect and get on with life. I have had temporary paralasis from the waist down and waking to be unable to speak with no knowledge of what speach is or even words. A left leg that thinks it has taken the next step only to fall when the right leg figures it is it's turn to move. Thankfully each is only temporary and resolved in a minute or two. My digestion is pretty well stuffed and there is nothing that can be done but manage it as best I can. I push myself through these events and won't give up, I don't know how to give up, this disease is not going to define me or what I can do, despite it constantly nibbling away at me. Sadly this won't stop it and eventually I will have no option but to capitulate, but until then I do what I have to do to deal with it and other health issues I'm plagued with. I believe I'm better know than when this all kicked off having made my own play book to guide me. I refuse painkillers and don't take anything for the other health issues, but I have no option but to medicate the digestive system, and that is barely making a difference. A difference that is certainly noticable if I stop treatment, then all hell lets lose.
Cheers
Sadly,there is no going back, to our pre AN lives, and our future as we had anticipated before this “ condition” changed forever, I wonder of if I will be able go teach my new grandson and engage in all I has hoped now in question. Will I be here when he’s 12, I don’t now know, all my symptoms though now masked by drugs will progress and shorten my life and rob me of moments of joy I has anticipated, don’t want to dwell in this, don’t have a choice, one pain at a time, one day at a time. Stay strong!
Connect
Connect
Like
Helpful
Hug
Our oncologist is wondering if my husband's dizziness when standing can be autonomic neuropathy. His neuropathy in feet/up towards knees and fingers has gotten pretty severe. And between that and the dizziness he is having trouble getting up and walking without needing to sit almost immediately. For some reason sitting in the car for the 1.5 hours to go to town causes the worst dizziness so getting into the doctor's office, or in to the infusion room requires some care. Same happens when we drive home. His blood pressure is pretty normal when sitting, but standing makes it drop 20 or 30 points. Anyway, I had never heard of autonomic neuropathy before and wondered if anyone else had oncologists mention it.
-
Like -
Helpful -
Hug
1 ReactionI have had autonomic neuropathy for many years. I have slow stomach emptying from it and balance issues. The PT guy I went to explained that there are receptors in our legs that assist us in knowing where we are in space. That is how we automatically balance when standing and moving around. With neuropathy these receptors are damaged. I need my eyes to see my surroundings to be able to get around. Or be able to hang on to something.
You might want to check into some physical therapy. It might not be an option at this time though. As far as car rides go maybe just recline back and close his eyes. Or try a blindfold. When I get a really bad vertigo attack, I have to lay down and keep my eyes closed. After a number of hours it will start to improve. The motion of the car moving will make it more difficult. I also carry motion sickness meds with me. I have not had a really bad case to try them out though.
Wishing only good things for you and everyone dealing with cancer.
-
Like -
Helpful -
Hug
1 ReactionThank you for your knowledge and suggestions! Dan has had the numbness from neuropathy getting worse, but we had never heard of autonomic neuropathy until this past week. His oncologist is suggesting a short break from chemo to see if that helps his various side effects. Balance is definitely one... between the dizziness and numbness in his feet/legs... it is difficult for him to walk. So far he has resisted using the walker I bought, but I think the day is coming .... hopefully before he falls and hurts himself. Thanks.
@sheridanb, here is a list of discussions related to auonomic neuropathy in the Neuropathy group that might interest you:
https://connect.mayoclinic.org/search/discussions/?search=autonomic%20neuropathy%20
Hi,
I have Autonomic polyneuropathy. It is believed to have started from a severe case of Campylobacter in 2013. It is not helped from uncontrollable T2 diabetes and excessively high BP for over 30 years.
Cheers
-
Like -
Helpful -
Hug
1 ReactionI was wondering what your symptoms are like minor like having a voodoo doll with my name on it and someone sticking pins arbitrarily everywhere, internally, and externally, and I’m not talking about occasional numbness
-
Like -
Helpful -
Hug
1 ReactionHi,
A good analogy. I think of it as when traffic lights stop working and the ensuing traffic chaos until service is resumed.
For me it is having a disfunctional digestive system from throat to the bowel and everything inbetween, which is permanent now. There is no treatment or cure for this. Random bouts of falling to the left which are now a stumble as the brain recognises the left foot hasn't moved and counters rapidly. I notice I start shuffling my feet when I get really bad, random lapses in remembering recent information, several times with the same info, usually the simplest of things to remember, like a time or a date. Poor hand eye coordination and cognetive skills, random muscle and joint pain random chest pain simulating a heart attack. It also interferes with my blood pressure when it wants, usually keeping it higher but can also drop it suddenly, because it can.
With ANS the brain still functions it is just the signals that have glitches, signals to and from the muscles and pain recepters get corrupted, randomly which can lead to muscular twitching not understanding what the signal is to do what.
As for the neuropathy part I have the typical diabetic neuropathy with feet and hands experiencing lack of sensation like I have socks and gloves on always.
So Autonomic polyneuropathy (ANS) is every nerve in the body is effected. The only counter I have found is to force the body to do as indicated by concentrating on the job at hand. The more I cancentrate the better the signal is interpreted. I'm unable to walk a straight line when moving slowly, my counter is to walk at pace which I concentrate on and ignore all around me, then I walk straight. This is what lead me to the realisation that concentrating on what I'm doing focuses the communication between muscles and brain over riding some of the glitches. This minimises the effects of ANS until I slow up to relax, then it's back to glitching.
To sum it up some things are majorly corrupted while others are lessor random features that can periodically get out if hand.
Cheers
-
Like -
Helpful -
Hug
2 ReactionsComrade in arms😏
-
Like -
Helpful -
Hug
1 ReactionHi,
It took me a little while to get over the devastation of this disease but I finally woke up to the fact we all die anyway, just some of us maybe sooner than expected. I try not to let it bother me or stop me doing what I want to do. There are days when all I can do is sit and wait out the daily symptoms, while other days I'm as good as I can expect and get on with life. I have had temporary paralasis from the waist down and waking to be unable to speak with no knowledge of what speach is or even words. A left leg that thinks it has taken the next step only to fall when the right leg figures it is it's turn to move. Thankfully each is only temporary and resolved in a minute or two. My digestion is pretty well stuffed and there is nothing that can be done but manage it as best I can. I push myself through these events and won't give up, I don't know how to give up, this disease is not going to define me or what I can do, despite it constantly nibbling away at me. Sadly this won't stop it and eventually I will have no option but to capitulate, but until then I do what I have to do to deal with it and other health issues I'm plagued with. I believe I'm better know than when this all kicked off having made my own play book to guide me. I refuse painkillers and don't take anything for the other health issues, but I have no option but to medicate the digestive system, and that is barely making a difference. A difference that is certainly noticable if I stop treatment, then all hell lets lose.
Cheers
-
Like -
Helpful -
Hug
2 ReactionsSadly,there is no going back, to our pre AN lives, and our future as we had anticipated before this “ condition” changed forever, I wonder of if I will be able go teach my new grandson and engage in all I has hoped now in question. Will I be here when he’s 12, I don’t now know, all my symptoms though now masked by drugs will progress and shorten my life and rob me of moments of joy I has anticipated, don’t want to dwell in this, don’t have a choice, one pain at a time, one day at a time. Stay strong!
-
Like -
Helpful -
Hug
1 Reaction